2023-11-10/11 Peyronie’s/PD/IPP continued…
First reviews of studies, state of the art mainstream wise, then from k) on alternatives
(male uro problem that can become very painful)
The following is putting me in the picture of my newest diagnosis and showing that all treatment is guesswork/trial & error.
c) Peyronie’s disease treatment overview:
" We have identified 20 distinct conservative treatment strategies. Among the oral therapeutics, only the use of phosphodiesterase type 5 inhibitors is currently recommended for clinical use in patients with concomitant erectile dysfunction. The use of collagenase from Clostridium histolyticum is supported by the best quality evidence in terms of intralesional injections for patients suffering from significant … curvature; however, interferon alpha-2b can also be an option in such patients. Among other non-invasive methods, extracorporeal shockwaves can be useful for pain reduction, and … traction therapy can lead to a reduction in … curvature and plaque size. Despite a wide range of non-surgical methods available for PD treatment, the majority are not supported by sufficient scientific evidence, and the treatment efficacy is underwhelming. Further research on the subject of non-surgical management of PD is highly warranted." Current trends in non-surgical management of Peyronie's disease-A narrative review - PubMed (Kozub et al. 2023) [I love the word “underwhelming”. To me it sounds like traction is more fitting than shockwaves.]
d) Peyronie’s disease: flavonoids as treatment:
The clinical potential of flavonoids in Peyronie's disease - PubMed (Sicignano et al. 2023) Not available, but here the references name “Total flavonoids of Oxytropis falcata Bunge” and “The flavonoid GL-V9”, both Asian, probably Chinese.
e) A Cochrane review of non-surgical treatments: There is little evidence supporting the effectiveness of most non-surgical treatments for Peyronie’s disease. Existing trials are mostly of poor methodological quality and/or fail to address patient-centered outcomes." Non-surgical therapies for Peyronie's disease - PubMed Rosenberg et al. 2023
f) Another review on treatments from 2023! “Seven different oral treatment options including vitamin E supplementation showed evidence for improving outcomes such as … curvature and plaque size. Of the intralesional treatments, Collagenase Clostridium Histolyticum showed evidence for improving … curvature (Range: 16.3-17 degrees, moderate level certainty of evidence). Intralesional Interferon demonstrated some improvement in curvature (Range: 12-13.5 degrees), plaque size (Range: 1.67-2.2 cm2) and pain, whilst intralesional calcium channel blockers such as Verapamil showed variable evidence for changes in the plaque size and pain. Extracorporeal Shockwave Therapy consistently demonstrated evidence for improving … pain in stable disease, and two mechanical traction devices improved curvature. Iontophoresis, topical medications, and combination therapies did not demonstrate any consistent improvements in outcome measures. Intralesional options demonstrate the best potential. Overall, results varied with few high-quality randomised trials present.” A systematic review of non-surgical management in Peyronie's disease - PubMed (Hayat et al. 2023)
g) And another, brilliant for details on the stages and pathophysiology too:
“The acute phase can last up to 18 months… During the stable phase, pain subsides and the plaque become even more organized; eventually, no further progression…occurs. … trauma is the most cited risk factor for PD … Additional risk factors … hypertension…” “These elevations further support a pro-inflammatory state and may contribute to contracture and subsequent … curvature. Collectively, an inflammatory cascade is triggered, which propagates fibrosis and plaque formation over fibrinolysis and plaque degradation. - The three primary histologic patterns of plaques are dense fibrotic plaques, dense fibrotic plaques with focal or patchy metaplastic ossification, or plaques with predominant metaplastic ossification” (I’d say mine are the first.) “In the acute phase, patients commonly – but not always – present with … pain and … curvature.” “Extracorporeal Shockwave Therapy - … the majority of data on the safety and efficacy of LiESWT for urologic indications has been in the form of single-center retrospective and prospective studies that are non-placebo controlled… the use of LiESWT for the treatment of PD can only be described as a safe, non-invasive, and experimental therapeutic option … it is challenging to conclusively state whether LiESWT is an effective treatment for PD. Platelet Rich Plasma is believed to exert regenerative effects at sites of tissue injury by releasing various cytokines and growth factors that promote angiogenesis and connective tissue regrowth. This is believed to be mediated by a supratherapeutic concentration of platelets within the sampled plasma, which release these growth factors and accelerate tissue healing. However, in the case of PD, it is unclear how exactly this mechanism of action would alter plaque size and curvature… trauma from the needling alone provided some therapeutic benefits…” [Augmenting the needling with hyaluronic acid reminded me that I got big problems from that when injected into my spine.] “Combination Antioxidant Therapy - The oral antioxidants used were silymarin, propolis, bilberry, vitamin E, ginkgo biloba” (e.g. with topical diclo). [I’m taking tons of antioxidants incl. silymarin and ginkgo, maybe that’s why it’s not painful?]
Peyronie’s Disease: An Outcomes-Based Guide to Non-Surgical and Novel Treatment Modalities - PMC Reddy et al. 2023 (pubmed for similar studies).
h) Peyronie Disease (here: Treatments)
“Physicians may offer non-steroidal anti-inflammatory agents to help manage pain during this period. Current AUA guidelines recommend offering oral therapy with vitamin E, tamoxifen, procarbazine, omega-3 fatty acids, or a combination of vitamin E with L-carnitine…” “plaque injection complications include … ecchymosis, swelling, pain, corporal rupture, failure of correction of curvature. Surgical complications might consist of infection, urethral injury, … shortening, … pain, hematoma, loss of … sensation, and recurrence of curvature.” Peyronie Disease - StatPearls - NCBI Bookshelf (pubmed) (Sandean & Lotfollahzadeh, 2023)
i) Brief overview, Feyisetan, 2023 (just in case)
j) Poster-pdf
tadalafil/Cialis which my uro prescribed seems a “better” kind of sildenafil/Viagra, a PDE-5-inhibitor, also prescribed for high blood pressure. Better cos it’s got a far longer half-life. Side effects muscle pain, loss of hearing, sometimes with vertigo, headache, GI problems (doc said heartburn), stuffy nose, back ache, dry throat, tiredness. That reads like a list of everything I already tend to have, not exactly encouraging.
k) https://peyronies-disease-help.com/peyronies-disease-exercises-bent-penis/
“The real problem of Peyronies is a tendency to produce an excessive healing response to trauma.” “jelqing can cause more injury”
“The Peyronie’s disease stretching exercises that were developed in a research project of the Peyronie’s Disease Institute in 2006 are greatly different than jelqing because they are extremely gentle. They approach soft tissue stretching from the standpoint of increasing tissue length much in the same way a ballerina attempts to become more flexible by using very light stretches over a prolonged period of time.” [Sounds brilliant, like the way I do other stretches too!]
" These exercises were selected on the basis of their ability to increase blood flow and increase lymphatic drainage to the pelvis in general and penis in particular. None of these massage and exercise techniques are ever applied directly to the penis, since this could possibly result in additional injury and more internal scar development. Instead these massage and exercise techniques are applied to the area immediately around the genitals to loosen tight and contracted soft tissue while avoiding further injury.
This Peyronie’s disease exercises video presents a series of Kegel exercise instructions increase the blood flow and health of the lower pelvis, deep tissue massage to the deep pelvic soft tissues to increase drainage of the lymphatic tissue which in turn will increase blood flow of the involved area, and lastly a series of instructions to increase energy movement in the area of the penis.
Peyronie’s disease treatment exercises
These various Peyronies disease exercises make sense because they attempt to address the potential underlying problems that could prevent the natural healing of the dense internal scar tissue that is at the heart of this problem. Schemes that merely try to enlarge the penis ignore the need to reduce or eliminate the Peyronie’s scar.
When these Peyronies disease exercises are added to an aggressively applied Alternative Medicine treatment program of diverse vitamins, minerals, herbs and enzymes it is sometimes possible to assist the tissue to remove the Peyronie’s scar. The earlier in the disease state this is started, and the more aggressively it is done, the better the therapy results tend to be."
[That doesn’t sound as good, cos I already do all this… 
Also this 2013 website, started 2004, doesn’t seem to know about shockwave therapy? Next step is to ask in the comments, as these have been answered till at least Feb. 2023.]
Continuing Sunday 12th…
k) continued:
A comment sneaks in the exact items in the “large pack”:
“Am I supposed to take all the the items in the box by following the dosages found on each of the labels? So I will be taking: Unique-E Vitamin, Inflamazyme, Natural C 1000, PABA, MSM + Vitamin C, and Scar Free. Then apply Super CP Serum, followed by Unique-E oil and lastly apply the PDM gel.”
l) Poster (Development of Peyronie’s Disease Following Endoscopy. Reich et al, praps 2023", see URL): “Men with a diagnosis of PD and history of endoscopy are most likely to have undergone a simple, flexible cystoscopy in clinic. There does not appear to be an association between the time to presentation of PD and the endoscopic procedure performed.” [Does that confirm that it can happen pretty much immediately, like I seem to have experienced?]
What’s good about the PDI-site is that they don’t promise much, don’t claim it’s perfect at all. What praps isn’t, is that they say treating it “aggressively” will help better - this could be read as suggesting to buy more supps/packs from the site… Wait a minute, what’s the(ir) cost, anyway? 173$ for starters, then ~80$/m. The video on CD costs 40$
Unique-E Vitamin, mixed tocopherols (42,50$/120)
Inflamazyme (by Nutra Biogenesis): ($56.89/90: Enzymes, various -ases, incl. serrapeptase and nattokinase.
Natural C 1000: several companies.
PABA: p-Aminobenzoesäure – Wikipedia
MSM + Vitamin C:
Scar Free: Various creams
Super CP Serum: skin needling with “Dr. Loren Pickart’s 2nd generation copper peptides blended with salicylic acid and natural antioxidants”
Unique-E oil: tocopherols (oral or topical): same as above, different form
PDM gel: not sure
“This Peyronie’s disease exercises video presents a series of Kegel exercise instructions increase the blood flow and health of the lower pelvis, deep tissue massage to the deep pelvic soft tissues to increase drainage of the lymphatic tissue which in turn will increase blood flow of the involved area, and lastly a series of instructions to increase energy movement in the area of the penis.”
[This reminds me of manual therapy types - my acupressurist did work directly on scar tissue, but older ones, this’ll likely be fresh in my estimate. But all of these are on youtube: a) pelvic floor training, b) deep tissue massage: https://www.youtube.com/shorts/Nq7698UYAvs, https://www.youtube.com/watch?v=CYBNGNqSbdk]
[[Oh drat, my laptop can’t cope with youtube anymore, I guess it’s too full, need to clean it out first!]]
Found a way to reduce the load: just using the preview function. Sound is possible too now, but it usually irritates me. So now as I still feel massaging would be best, I had a look at this one, and before DoctorJo too, to get ideas. https://www.youtube.com/watch?v=gyK-UmNQ4d4
This one recommends stretching not massage as exercise for PD/IPP, but that seems more for curvature: https://www.youtube.com/watch?v=nGlIztmlcEE
Added Nov 15th:
The PDI-DVD/video teaches
- locate your pubococcygeus muscles for lower pelvis isometric exercises
- Nei gung, a unique and invigorating exercise activity
- acupressure massage to increase energy to the lower pelvis.
plus it says here "Massage and exercise video", meaning:
– series of Kegel exercise instructions increase the blood flow and health
– deep tissue massage to increase drainage of the lymphatic tissue
– instructions to increase energy movement in the area.
As to the costs of the PDI-plans: the 173$ is for the small plan, 234$ for medium, and 436$ for the large one (100$/m after) which seems to contain a slightly different set of supps than the comment above suggested, like quercetin/bromelain (plus an I think irrelevant manual stretching video).
I was going to comment and tell my story on the cause-page of the PDI-site, but I can see if I give him a real @ddress, I’ll be spammed, maybe a temporary one, I’ll see.
2 German pages mentioning traction/stretching are aerztezeitung and a pharmacy-page mentions that and also shockwaves for pain, not whether it reduces the scar. This German uro-page mentions PABA as well as the PDE5-inhibitor that I was prescribed.
2013 article on PD.
2013 review on traction
2015 PD after a urethral swab.